New to this forum
I have LSE Lupus. I've been sick off and on since I was ten yrs old... I'm now 32.
It took this long to finally get diagnosed. I have found that most doctors aren't very educated on diagnosing lupus.
I went most of my childhood and early adult life being mistaken for hypocondria by my family and the doctors knowing it was not that... but since they didn't know what it really was... they would just treat each new symptom as it arrived. And finally they quit running tests to see what was making me sick.
I've had everything from swelling in the joints arthritis, skin rashes, pnemonia, paracarditis, to waking up with collapsed lungs from inflammation, you name it.... I've had it. It's been incredibly frustrating.
I think when most people find out they have an illness they are probably stunned at first... and may even get depressed. I on the other hand was so sick of being sick and not knowing why... that I was (Not Happy) but releived that what was wrong with me actually had a name!
Now when I go to the doctor I don't get the 'deer in the head light look" anymore when they see my medical history. Instead they seem to listen to me now when I tell them soemthing is going on with my body. (not all doctors but the ones who are familiar with SLE).
I'm a very possitive person (always looking on the bright side)... and this is the first time that I've reached out for support. I'm the kind of person that thinks I have to accomplish it all... all by myself.
However, for the first time... I'm feeling a need to have some kind of support system... I've recently moved across the country from Chicago to sunny Santa Barbara County Ca.
I've moved away from all my family and friends because the job market was better here and I am a single mom with three daughters.
I get up at 4 - 4:30 am... Go to work come home at 3:30pm.. help kids with home work for about two hours.. while I'm trying to clean and cook dinner... then there's the dinner mess, laundry, all of the things I'm sure you are aware of with having kids.
I'm doing this through a pretty relentless flare up right now.
I'm lucky if I have 1 out of 10 days that I'm not sick, fatigued in pain. Lately it's been kidneys, uti's, very fatigued, raynauds syndrom, etc... With that... I still get up and do what I have to do every day ... with out fail. In today's economy, I have no choice but to keep going... and with the demands on the schools right now.. well, that means more demands for the parents as well when the kids get home from school.
Since I'm new to the area, I'm lacking in the "support system' area... you know the one.. the one that tells you "it will get better, hang in there"!
Always, I've been the strong one of my family... the one who holds everything together, never giving up and never breaking down, (not even when I'm sick).
Now it's different for some reason, I feel like I need to fall down and break apart for a little while... I haven't yet ( at least not completely)... but I feel it coming.
Im probably "babbling" through typing right now and if so I'm sorry for that... I think what I probably need most in my life is a really good house keeper or nanny to help take some of the stress off... I feel like I'm going non-stop all of the time. But hey, let's be realistic here... what single mom can afford a nanny? I make more than most single mom's but not enough for the real luxurious life style.
K... I'm done babbling.... Any one else out there as frustrated or worn out as I'm feeling right now? If so .. PLEASE let me know... then we can vent to each other about it.[/img]